Late-in-life care: fragmentation and complexity for the chronically ill

Jessie and Mary Harris needed a lot more than doctors, hospitals and drugs when a barrage of diseases started pounding Jessie in 2012.

This is the first in an occasional series on late-in-life health care — when chronic illness or a constellation of medical problems can cause a cascade of new needs, complications and worries. This yearlong examination of issues faced by such patients and their families is funded through a regrant by Allina Health from the Robina Foundation. It is conducted in conjunction with media partners TPT andAmpers. A TPT documentary, "Late Life: Redefining Care," can be seen here.

If this day is typical, 106 Minnesotans will die before midnight. Of those passings, 16 will be unexpected. Most of the other 90, though, will represent the sad culmination of lingering diseases.

Given a choice, we would opt to live a long, healthy life and then be one of the 16 — dying suddenly. But those are the lucky few.

When the Grim Reaper makes a call in Minnesota, the odds are overwhelming that it will come in the guise of cancer, heart disease, diabetes and other ailments that sap life slowly. And whether those diseases strike a younger person or creep in with age, they almost always cause a period of frailty.

We deploy mighty medical arsenals to fight the specific diseases, spending billions every year. Much of that investment comes as last-ditch, life-saving attempts in patients who are near death.

A profoundly fragmented, confusing system

Meanwhile, fragile individuals who have months or years to live find themselves in a profoundly fragmented and confusing health-care system where they too often are treated as disease cases rather than individuals with personal wishes and practical needs.

“We have a health-care system that is great if you have a sudden heart attack or you come down with pneumonia,” said Dr. Diane Meier, who directs the Center to Advance Palliative Care at the Icahn School of Medicine at Mount Sinai in New York.

“But it’s completely useless during the 10 years that you are living with progressive chronic disease and you need help at home,” said Meier, who is also a national adviser to Allina Health's Robina LifeCourse Project, one of several efforts under way nationwide to test models for delivering more supportive, whole-person care to seriously ill patients and their families.

Where are the handymen, advocates and rides?

A weakened woman who fell down a flight of stairs could get thousands of dollars worth of emergency-room treatment. But could she get a handyman to install a hand rail on her stairway?

A man with multiple chronic diseases could see a dizzying array of specialists. But could he and his family get help navigating that system and advocating for their own wishes?

A doctor could prescribe drugs that cost more than a car. But could the patient get transportation to the clinic?

Too often, the health-care system has no answers to such questions. The system evolved to treat episodes of disease, not to provide comprehensive care during the years that patients are chronically ill, say advocates for the growing ranks of frail, late-in-life patients.

U.S. lags in spending on supportive services

While the United States spends more on health care than other developed countries, it spends far less on related social services.

Other countries in the Organisation for Economic Co-operation and Development (OECD) provide an average of $2 worth of supportive services for every dollar spent on health care. That is twice the amount the United States spends per health-care dollar, according to analysis of OECD data by Prof. Elizabeth Bradley of the Yale Global Health Leadership Institute.

Increasingly, health-care experts point to that disparity to explain the reasons that the United States lags behind other countries in life expectancy and other key health measures despite its enormous health-care investments.

Thus, while doctors pull out all the stops for individual medical interventions when life is threatened, ways of helping people deal with the myriad day-to-day needs posed by chronic illness or multiple medical problems are rarely built into the system.

A cascade of worries

Minnesotans Mary and Jessie Harris needed a lot more than doctors, hospitals and drugs when a barrage of diseases started pounding Jessie in 2012. On top of a weakened kidney and a pacemaker-dependent heart, he came down with multiple myeloma, then pneumonia, then a stroke.

Each condition complicated treatment for the others. Fortunately, Mary knew the health-care system. She had worked for years as a nurses’ aide, and she currently processes insurance authorizations for Health Partners.

“For a nonmedical person, it would have been really confusing,” Mary said.

The cascade of worries at home, though, was beyond confusing. Suddenly, Jessie could not work, drive, mow the lawn, walk the dogs, shovel snow and perform most of the other functions that had been routine.

Instead, he needed more personal care, more drives to doctors, more visits in hospitals. Worried that he couldn’t stay alone in their South Minneapolis bungalow, Mary toured assisted living facilities and cast about for home health care.

Gently, she broke the news to Jessie that the beloved dogs would need a new home.

That was too much. Somehow, they needed to stay put.

And even while working, Mary, 61, managed to cobble together enough help from neighbors, friends and a son who lives in Washington State.

“It was adrenaline,” Mary said. “I had more energy for some reason.”

It helps that his health has stabilized; he is also a patient in the LifeCourse initiative, which provides extra supports.

'I don't have time to get sick'

Still, Mary worries how she could handle another lapse in his health. Most of her sick leave at work is spent. And she doesn’t dare to think about her own rumbling stomach and sore knees.

“I don’t have time to get sick,” Mary said.

The adrenaline has run out for too many other caregivers. And now, the numbers of frail patients are set to skyrocket, threatening to overwhelm all capacity for providing both a high level of care and needed support services.

Explosive growth

Baby boomers are aging into the years when diseases pile up. Younger people also live with debilitating diseases and late-life decline. By far, though, people older than 65 are more likely to face that prospect.

Now their numbers are set for explosive growth.

By 2020, for the first time in Minnesota history, those 65 and older will outnumber school-age kids, according to the Minnesota state demographer. By 2030, one in four Minnesotans will be 60 or older.

Nationally, by 2030, 9 million Americans will be over age 85, when they are highly likely to suffer multiple chronic conditions, according to research by the Coalition to Transform Advanced Care. Their ranks will have more than doubled since the year 2000.

Even before the boomers advance into disease-prone old age, the Minnesota Department of Health ranks chronic disease as the state’s costliest health problem. Some $5 billion a year is spent treating chronic diseases in the state. And they are by far the leading causes of death. Cancer is the No. 1 cause, followed closely by heart disease, then stroke, respiratory illness, Alzheimer’s and diabetes.

One reason these diseases have become so prevalent is because we live longer than our grandparents and all the generations before them. In tandem with that trend, medicine has geared up remarkably to treat the diseases. A heart attack isn’t necessarily a death sentence anymore. It’s a mandate to rush to a hospital for stents, bypasses and drugs.

Many boomers aren't prepared

What we haven’t done nearly so well is prepare for the frailty that comes hand-in-hand with disease.

A sizable chunk of boomers in Minnesota appear ill-prepared to care for their own late-life needs, according to a survey conducted by the Minnesota Board on Aging and the state departments of health and human services. Nearly a third of the boomers surveyed said they were unsure how they would cover the costs should they need long-term care services. And 18 percent said they planned to fall back on a government program.

By their sheer numbers, those boomers will overwhelm the ability of family and friends to care independently for them. And they will tax the medical and public support systems to a degree that experts say is unsustainable.

In other words, change will come one way or another.

“If we do nothing, we will swamp the economy,” said Dr. Joanne Lynn at a recent media briefing organized by the Journal of the American Medical Association. Lynn directs the Center for Elder Care and Advanced Illness at the Michigan-based Altarum Institute.

“If we do nothing, we will either learn to walk out on old people or we will completely spend the output of the economy.”

Rather than “care” for the chronically ill, Lynn said the current system “provides disjointed specialty services, ignores the challenges of living with disabilities . . . disdains individual preferences, and provides little support for paid or volunteer caregivers.”

While that delivery service generates about half of the person’s lifetime cost for health care, “patients and families are left fearful and disoriented, with pain, discomfort and distress,” she said.

Massive costs at end of life

The upshot is a system in which massive medical costs pile up during the last few months of a patient’s life, often at a time when the patient has little chance of surviving.

Precise data characterizing fragile, late-life years is hard to find if you include privately insured younger people who struggle with chronic disease. For patients who qualify for Medicare, though, the Dartmouth Atlas of Health Care provides cost measures by analyzing Medicare reimbursements.

Care for people with chronic diseases accounts for more than 75 percent of health-care spending. Americans with five or more chronic conditions represent a disproportionate share of that cost. In 2005, they represented 23 percent of Medicare beneficiaries and 68 percent of Medicare spending.

In Minnesota, Medicare paid out an average of $70,000 during the last two years of life for people who died in 2010. More than half that payout, $36,000, came during the last six months of life when the typical patient was treated by nine different doctors.

I'm looking forward this series that will put "health reform" into the more complicated context of economic and demographic trends.

The long-term discussion needs to be more than simply the technology used to insure access to the current medical care system, but more along the lines of how can society support quality of life throughout the lifespan.

The problems that are outlined in this article are so familiarly frustrating for anyone who has a had a loved one deal with chronic illness. Rides to the clinic, chore services, others are all long-term supportive services (often called long-term care). But Minnesota and our country has no financing system for long-term care, so people can't get the services unless they can cobble together family, friends and neighbors, That's just not realistic.